Babies are a treasure. In the United States they are a treasure at risk as the US infant mortality is rising. This week the prognosis began to improve. The Newborn Coalition, which made its public debut at The National Press Club in Washington, DC, “serves as a vocal advocate for the newest, most vulnerable citizens through partnerships and programs that enhance health care for newborns and their families.”
Two local moms (including the author of this article) and advocates for pediatric health care serve on its advisory board. Mona Barmash, Founder of Philadelphia based,The Congenital Heart Information Network(TCHIN), son lives with a congenital heart defect (the most common of birth defects). Barmash has understood since his birth the importance of education and awareness for newborn related health issues. On Friday, September 17, 2010, Barmash was thrilled to share with TCHIN’s extensive membership base the news that the first goal of The Newborn Coalition has already been met. Wrote Barmash, “the Secretary’s Advisory Committee on Heritable Disorders in Newborns & Children (ACHDNC)voted to recommend that pulse oximetry screening for critical congenital heart disease be added to the newborn screening uniform panel.” In her email she quotes Annamarie Saarinan, one of The Newborn Coalition’s co-founders, “At 2:40 eastern time today, the national committee on newborn screening voted to YES to recommend pulse oximetry screening for critical congenital heart disease be added to the newborn screening uniform panel….was not anticipating vote until January.”
The Newborn Coalition consists of a wide range of stakeholders interested in newborn health. Minnesota mom and co-founder, Saarinan says her daughter, “Eve was diagnosed with critical congenital heart disease at 2 days old – we navigated the system and know the pitfalls firsthand. Ours is actually a success story – but there are many that can be improved upon.” The Newborn Coalition aims to improve those in a collaborative and meaningful way as Saarinan goes on to explain, “The coalition’s Critical Partners and Advisory Board include a growing list of forward thinkers from providers, vendors, and the public policy space to make sure that the coalition’s time and resources are laser-focused. She shares that some of those involved at the ground floor include the American Telemedicine Association, VisionShare, the Health IT NOW Coalition and 1in100.”
According to its website, “The Newborn Coalition will improve understanding of newborn health and risk factors while helping drive policies that enhance educational outreach, improve outcomes, access to quality care, and craft sustainable, scalable, technology-based practices benefiting newborns.”
Local legislative support has been received by Representative Bryan Lentz (D), ““On the public launch of the “Newborn Coalition”, I offer my strong support to this organization that will work to improve understanding of newborn health risk factors and increase access to quality newborn health resources.”
Mary Ellen Mannix (Wayne, PA) fully understands the impact of the success, neglect, or failure of these goals. As a mom and Advisory board member, she is committed to increase awareness and collaboration with The Newborn Coalition.
Mannix is grateful of his support. “Representative Lentz has been a consistent supporter of improving the access, quality and research in health issues that affect children. His leadership to support this coalition early should help other legislators and Pennsylvania consumers appreciate the great value of The Newborn Coalition for everyone,” Mannix commented.
“The Newborn Coalition will give a voice to the youngest members of our communities. It is saving the future.”